So here's a heart attack for all the good LADAs....

[smidge]

@Susiespearish - if you're already low-carb, lost weight, on BG-lowering meds and are still running BGs in the 20s, it's time for insulin. Really, this is a serious health issue for you. You are risking your life. It is highly unlikely that you are a Type 2. It has all the hallmarks of LADA and you must take that seriously.

Smidge

 

[Susiespearish]

@Susiespearish - if you're already low-carb, lost weight, on BG-lowering meds and are still running BGs in the 20s, it's time for insulin. Really, this is a serious health issue for you. You are risking your life. It is highly unlikely that you are a Type 2. It has all the hallmarks of LADA and you must take that seriously.

Smidge

I know smidge:-( I just keep hoping that maybe the next magic pill may work .I also have adrenal problems and heart failure so i keep thinking that maybe if I get those sorted my BG will lower .Guess I'm just in denial .I have an appointment back at the endocrinologist the end of this month .If things haven't bucked up on the new medicine I'll go on insulin.

 

[Spiker]

@Ian DP I've been low carbing for months guys .Lost a lot of weight but it really hasn't affected my levels that much .they've upped my meds and tried others and my GP has now referred me to the endocrinologist who wants insulin :-(

If you have been low carbing and get 27mmol/L when you haven't even eaten then you need to go on insulin NOW. As in today, right now. You are causing yourself serious damage. If a GP or paramedic saw that reading you would be immediately hospitalised, probably by ambulance. You are in a very serious situation. You need to be on insulin right now. It is absolutely nothing like as bad as you are afraid of. It is nothing like the harm you are doing yourself every day, running those sugars.

 

[Spiker]

I know smidge:-( I just keep hoping that maybe the next magic pill may work .I also have adrenal problems and heart failure so i keep thinking that maybe if I get those sorted my BG will lower .Guess I'm just in denial .I have an appointment back at the endocrinologist the end of this month .If things haven't bucked up on the new medicine I'll go on insulin.

Yes, you are in denial and you are harming yourself. Don't wait until the end of the month. Go to the clinic tomorrow, or go to hospital tonight, and start on insulin. You know it has to happen and there is no time to waste now.

 

[Susiespearish]

Yes, you are in denial and you are harming yourself. Don't wait until the end of the month. Go to the clinic tomorrow, or go to hospital tonight, and start on insulin. You know it has to happen and there is no time to waste now.

According to the replies on another post Spiker it may be my machine that's out a bit and I'm told my Hba1c is accurate and the one before last was only 8.6 % so the fact that this month its 14% may just be a set back .I'm taking the new meds religiously and had a fasting of 14.4 this morning so a slight improvement . My doctor knows what my BG is as I showed him my meter on Monday .

 

[smidge]

Hi Susie!

BG meters can read a bit high or a bit low, but not by the margin you're seeing. They can be up to 20% out and are more likely to be so when you're out of range e.g. very high or very low. However, this would not account for the numbers you're consistently seeing.

I haven't seen your other thread, so I don't know who is advising what, but HbA1cs can also be wrong. Often when you have certain blood conditions they can be wrong. For example, anaemia can give a falsely low HbA1c. Is it possible your 8ish HbA1c was a result of another medical condition and didn't truly represent your levels? There is another test called a fructosamine test that they can do if there is a suspicion that your HbA1c is wrong - I had one just recently as a consultant had called into question my HbA1c - in my case, the fructosamine simply confirmed the HbA1c result as genuine.

Spiker's concerns for you are very real. Insulin is critical to your health, and not just for reducing your BG. You will see many posts from Type 1s talking abouot a fear of DKA. It is a condition that can come on rapidly and is generally caused by high BG and insufficient insulin. By high BG, I mean anything over about 13. I would treat BGs above 13 with rapid-acting insulin and test for ketones. DKA can kill you within hours. The levels you are running, if anything like accurate are not just damaging long-term, but can cause sudden and catastrophic events too - DKA, Heart attack, stroke. This is why you need to see someone with appropriate expertise quickly. Your doctor sounds to me like he is not equipped to deal with this - as well-meaning as he might be, when he saw those levels on your meter, he should have sent you to your local diabetes hospital immediately - especially with your other health issues.

Smidge

 

[elaine77]

In my experience the GPs are useless anyway! I had to get myself referred back to my consultant as my DSN was just like oh don't worry take an extra Metformin! This was despite me having constant BG levels of 10-20mmol. Needless to say the consultant wasn't very happy and he also wasn't happy they had switched my diabetes type to type 2 when he had specifically told them that there was no way I was type 2! I don't trust the surgeries at all and am gutted I've been discharged back into their care :-(

 

[Susiespearish]

Hi Susie!

BG meters can read a bit high or a bit low, but not by the margin you're seeing. They can be up to 20% out and are more likely to be so when you're out of range e.g. very high or very low. However, this would not account for the numbers you're consistently seeing.

I haven't seen your other thread, so I don't know who is advising what, but HbA1cs can also be wrong. Often when you have certain blood conditions they can be wrong. For example, anaemia can give a falsely low HbA1c. Is it possible your 8ish HbA1c was a result of another medical condition and didn't truly represent your levels? There is another test called a fructosamine test that they can do if there is a suspicion that your HbA1c is wrong - I had one just recently as a consultant had called into question my HbA1c - in my case, the fructosamine simply confirmed the HbA1c result as genuine.

Spiker's concerns for you are very real. Insulin is critical to your health, and not just for reducing your BG. You will see many posts from Type 1s talking abouot a fear of DKA. It is a condition that can come on rapidly and is generally caused by high BG and insufficient insulin. By high BG, I mean anything over about 13. I would treat BGs above 13 with rapid-acting insulin and test for ketones. DKA can kill you within hours. The levels you are running, if anything like accurate are not just damaging long-term, but can cause sudden and catastrophic events too - DKA, Heart attack, stroke. This is why you need to see someone with appropriate expertise quickly. Your doctor sounds to me like he is not equipped to deal with this - as well-meaning as he might be, when he saw those levels on your meter, he should have sent you to your local diabetes hospital immediately - especially with your other health issues.

Smidge

I'm sorry Smidge .i didn't make myself very clear .He did refer me weeks ago and i had my first appointment three weeks ago with the endocrinologist. He said insulin but I asked for one last try with new meds and he agreed to let me try for one month. I was given ketone sticks and check at least five times a day and as yet although my urine is loaded with glucose there are no ketones which actually surprised me on the amount of carbs I've dropped to . I don't know if my hypertension and heart failure would affect those readings but I know it plays havoc with my fluid levels and I am taking a whole raft of medication for those which may skewer it a bit .

 

[Susiespearish]

In my experience the GPs are useless anyway! I had to get myself referred back to my consultant as my DSN was just like oh don't worry take an extra Metformin! This was despite me having constant BG levels of 10-20mmol. Needless to say the consultant wasn't very happy and he also wasn't happy they had switched my diabetes type to type 2 when he had specifically told them that there was no way I was type 2! I don't trust the surgeries at all and am gutted I've been discharged back into their care :-(

Now see i had the opposite reaction Elaine .My doc who is our practice diabetic guy thought the hospital would act immediately but the consultant seemed quite laid back and was more interested in ordering tests if I'm honest .Had he demanded insulin I would have gone with it but it was him who offered to add the new meds when I seemed reluctant and he didn't even give me ketostix ...the GP did as he was worried that he hadn't done that ..I do think GP's struggle in this field though .

 

[elaine77]

My consultant ordered my tests literally within a week of me visiting my GP so I had full blood and hba1c as well as c-pep and GAD test. The gap between the GPs and the endo consultants is shocking really....

 

[Susiespearish]

My consultant ordered my tests literally within a week of me visiting my GP so I had full blood and hba1c as well as c-pep and GAD test. The gap between the GPs and the endo consultants is shocking really....

I was taken to A&E with an angina attack months ago and they got a blood of 22 ...they just sort of shrugged and said oh that's a bit high.Seems what worries us doesn't worry them .

 

[noblehead]

Susie, I would take on board the good advice given to you and get seen asap, it's time for insulin with those high bg levels.

 

[elaine77]

So I've been on insulin for a month now and I've put on half a stone! I'm so fed up I've not changed my diet since starting insulin and yet my BMI has gone up from 22 to 24!!

Im guna have to stop this insulin malarkey soon and risk losing a limb I think!!

 

[Frankie-A]

Hi guys,

So, as many of u know, I was diagnosed with LADA in December 2012 and put onto Metformin. This is what has happened so far:

December 2012: HbA1C - 84 - put onto 2x 500mg Metformin a day (after refusing to continue with glic)
February 2013: Hba1C - 49 - no change to meds
June 2013: HBa1c - 46 - no change to meds, discharged from consultant care and left with my GP surgery
November 2013 HBa1c - 49 - no change in meds

Levels started to creep up in January 2014 to the point where I wasn't happy with it so went back for an early HBa1c:

January 2014: HBa1c - 54 - no change in meds and told to leave it until July unless creeping up. Levels were creeping up so not happy and went back early.
May 2014: HBa1c - 63 - not happy with this but still no change in meds and worried about increasing levels. Told DSN this and she said come back August.
August 2014 and my HBa1C was 86 which is higher than when I was diagnosed!! Told to increase meds by one Metformin a day!!

Levels are currently between 10mmol and 20mmol all day regardless of what I eat or don't eat and I'm not happy so I'm considering asking to be referred back to my consultant as I'm not happy with the way my diabetes has been managed since I was switched back to the doctors. I've had no dietary information or research information and they have still got me down as type 2 diabetic on their system! When confronted about this and the fact it is affecting statistics and research and is false, the DSN said:
"you need to be careful putting that u are type 1 as it changes everything and you're not on insulin so you can get away with it for longer. Plus, the system would constantly ask why we haven't prescribed you insulin if ur type 1. There's loads of tablets we can try yet before we consider insulin."
So now I'm in a situation where I'm very worried about my levels and don't know what to do. For the record, my BMI is now 20 and not only did I test positive and high for GAD autoantibodies but my sister has recently been diagnosed with coeliac which is also an autoimmune condition so there is no doubt in my mind that I have autoimmune diabetes.

Fed up and wish they would find a cure! Or stop punishing insulin users.... Or just anything would be helpful!

Hi elaine77. I really feel for you. To some extent your story has similar elements of lack of knowledge on the part of your doctors as I have experienced.

Gliclazide and Metformin didn't work for me either, but I needed to prove that to my doctor, who then referred me to an endocrinologist. I then had to prove it to him too. Two of the four pages of his report were devoted to lamenting why such a great drug like Metformin wasn't working.

He recommended that I go onto insulin. I needed to be quite assertive with my GP before she put me on it.

Why the reluctance? I don't know. But I have since found out that some specialists recommend early insulin intervention for LADA people.

This is outlined in the Wikipedia entry on LADA and I quote: "LADA often does not require insulin at the time of diagnosis and may even be managed with changes in lifestyle in its early stages such as exercise, eating appropriately, and, if indicated, weight loss. However, some clinicians believe that insulin should be started at onset or as soon as possible, rather than using sulfonylureas or other diabetes pills for initial treatment." (http://en.wikipedia.org/wiki/Latent_autoimmune_diabetes_of_adults).

The Clinical Adviser website has a similar message. Again I quote: "Early insulin therapy appears to be recommended, but definitive treatment guidelines are not yet available." (http://www.clinicaladvisor.com/diag...etes-in-adults-still-evolving/article/203578/).

Is it worth putting this in front of the DSN?

 

[smidge]

Hi Frankie. Elaine was managing on Met for a year or so, but she has just had to reluctantly move onto insulin and is struggling with bruising at the injection sites and weight gain. So we're all hoping things settle down for her soon.

In terms of early insulin intervention, this seems to be something UK medics are very reluctant to do - as are the GAD and c-peptide tests at diagnosis to actually diagnose the right condition. So your story is a familiar one to me having been made very ill by a DSN insisting I was Type 2 when all the evidence pointed to the contrary. Luckily for me, the insulin intervention came just in time to save my health, but not in time to slow the deterioration in pancreas function unfortunately. I think most of our medics are just ignorant to the LADA condition.

Smidge

 

[LucySW]

I think most of our medics are just ignorant to the LADA condition.

Smidge

Yes. It's the doctors who were trained some time ago or who haven't seen the research. So I think it's a time lag. I'm in Denmark currently, and though the hospital's policy is to run the antibody test just to be sure, the endo I saw on the day the GAD test came through didn't know anything about LADA, as I've been complaining in another thread. Hence (oh go on, complain again) she said, You are Type 1, take 10u insulin now or get DKA. Which was rubbish.

But other consultants I've seen have known all about it. And my diabetic nurse was aware of it, but dimly.

 

[Karen88]

Hi everyone. I was admitted to hospital last may with a temperature of 41, after 5 days of iv fluids n ab's i was allowed to go home but they then dropped a bombshell by announcing that i was t2 diabetic. I'd had bg levels of 13 the whole time i was in there apparently, so as a slim 53yr old i was shocked! They showed me how to test my bg gave me gliclazide and sent me home. I was on gliclazide for a ciuple of months then started having hypos all the time, which i found extremely scary. I was told to stop the pills and had to go for a gad. Yep, I'm lada, my first thought was what the hell is that and why me! October 2013 i was put on very low dose of novorapid and given my background insulin all ready for when i will eventually need it! I've tried it but not regularly. I had hypos all the time. I needed help and wasn't getting any from my gp. I sat trawling for apps that might help, like carb calculators etc but I have to say the most amazing one i found was an insulin calculator, it was brilliant, it took the guesswork out of how much insulin i should take according to what i was about to eat, it even told me how much to take just to correct my bg levels. But... I HATED this happening to me, i felt like i had totally lost control of my life and every minute and everything was ruled by my diabetes. I drove myself insane reading everything trying to understand all about lada. I don't even know anyone that's diabetic! Insulin made me put on weight because i was eating more. I have had "issues" with food and putting on weight for yrs. So i stopped injecting and buried my head in the sand. To be this age and have to totally change my non eating habits was impossible. I even stopped testing my bg. I knew i had to try something so recently asked my gp to try me on metformin, omg what a mistake, being so harsh on the stomach is the probable explanation as to why i am now recovering from a flare up of colitis (another autoimmune desease) which has led me to you! I read on fb at 4am when sleep eluded me, about a miracle cure for diabetes, i have spent hrs reading everything i could find and have come to the conclusion that it's all a scam, but I'm not sure after all these hrs how i found this forum but i did! I have read everything you guys have said to Elaine77 and her issues regarding insulin and i THANK BUDDA i did! Laying here in my sick bed having a pity party for one it has woken me up into accepting what i must do, i must start using my insulin and permanently this time! especially now i am on a high dose of steriods which have sent my bg rocketing! No more ostrich impersonations from me. Reading all your comments have been so enlightening and i somehow felt less alone in the lada world. I wish I'd found you sooner. ..

 

[smidge]

Hi Karen and welcome. As I hope you've realised, there is no cure for LADA or any other form of diabetes come to that. We're stuck with it. There are quite a few of us with LADA on here. Many of us were in our 40s and 50s and slim when diagnosed. Many of us were misdiagnosed as Type 2 initially. Most of us had never heard of the condition we now have to live with. I think we were all in shock at diagnosis. It really is important that you take your insulin, adjust your diet and take control.

Smidge

 

[LucySW]

Poor Karen. Well, now you have. As you see from my complaint, I was told to take much too much insulin too. Luckily I'm bloody minded and said No.

Insulin is what our bodies produce - it's probably the best cure. Plus low-carb, I'd add, but I'm a Real Bore on this subject.

Feel not alone, try to be patient, write everything down, and when it comes to insulin, take small steps. And ask for expert help.

PS I really like 'having a pity party for one.' I have lots of those!

 

[Karen88]

Thankyou

Hi Karen and welcome. As I hope you've realised, there is no cure for LADA or any other form of diabetes come to that. We're stuck with it. There are quite a few of us with LADA on here. Many of us were in our 40s and 50s and slim when diagnosed. Many of us were misdiagnosed as Type 2 initially. Most of us had never heard of the condition we now have to live with. I think we were all in shock at diagnosis. It really is important that you take your insulin, adjust your diet and take control.

Smidge

I have definitely woken up now. I'm so fed up of feeling unwell. It's time to take control. I know it's not going to be easy. The whole counting carbs thing is a nightmare!